I wrote this for my church April 25, 2002 for the Wilderness Wandering sermon.
Question: Could you tell me your history with the disease?
My doctors think the ALS started to develop when I had an unexpected fall in February 1997. I was walking up my basement steps carrying my then 9-month old daughter. Near the top of the steps my left knee gave way and I fell hard on my kneecap. It swelled and bruised. I adjusted my walk to favor my knee and seemed to be doing fine. A few months passed, then I started falling without warning. A visit in July to the doctor and a MRI later, I discovered I had damaged my knee much more than I had thought. A few months of physical therapy helped and my falls stopped. In March 1998 while taking my son to preschool one morning I noticed the door to the school seemed heavier to open. My hands had been acting funny. For example, when I tried to shut the water off after I washed my hands the knobs suddenly were hard to turn. I had begun falling again too. One night I was being silly with the kids. I jumped up, lost my balance and fell backwards head first into the entertainment center. I gave myself a mild concussion. I knew something was terribly wrong. I made an appointment to see our family doctor. That visit started an avalanche of tests, doctor appointments and fear. Immediately upon seeing me walk, my doctor began ordering a MRI of my brain and blood work. She also referred me to a neurologist because she suspected I had Multiple Sclerosis (MS).
I left her office in a daze. I was only 30 years old; I’d never had any sickness in my life. I couldn’t process what was happening to me. Over the course of the next two months, I saw my neurologist 16 times. I had a spinal tap, 3 more MRI’s and enough blood tests to make me feel like a pincushion. Everything tested negative for MS. I was referred down to IUPUI Medical Center. The doctor there said he was 50% sure I had ALS. My doctor here disagreed, he still said MS. That is what I wanted to have so I stuck with him. During all this I was also in physical therapy again this time for my whole body. I went 3 days a week.
At first I showed signs of improvement in my strength, but as the months passed it became apparent that the new strength I had gained had faded away. I still saw my neurologist every month to see how my symptoms were progressing. I went back to IUPUI for a painful muscle test and after looking at the results they were 80% sure it was ALS. Again my doctor disagreed. He did his own muscle test. Still got no definite diagnosis from him. All the while I continued to weaken. I lost all confidence in him.
My grandma (mothers side) died of ALS when I was six. She was sixty when she died. She had it show up in her throat first. She died within one year of developing ALS. After my official diagnosis I had a genetic test done to see if I had the familial gene. I do not, mine is a random case. If I had the family gene that would mean my mother, brother, uncles and my kids would also have it. Thank the Lord I don’t have it!
Question: How and when were you diagnosed?
I was tired of not knowing what I had. A friend of mine gave me the name of one of the leading doctors in ALS. I wanted to see him so I would finally get the uncertainty of having ALS put to rest. I got an appointment and on January 15, 1999 my parents drove me to Madison, Wisconsin to see Dr. Benjamin Brooks. After completing a battery of tests Dr. Brooks gave me the diagnosis I wanted, but it was the one I didn’t want to hear. It was ALS with a life expectancy of 3-5 years.
Question: What were your symptoms?
Falling without warning, feeling weakness in my arms and hands. My speech slurring and waking up every morning finding I had drooled all over the pillow. The biggest symptom is twitching (fasciculations) of the muscles for me. Laying in bed and trying to go to sleep can be a challenge when your body starts twitching. I still haven’t gotten used to them. I doubt I ever will. I know wherever an area starts twitching that muscle will be wasting away next. I also experience some uncontrollable times of laughing or crying. That really annoys me.
Question: Because this is a rare disease was it difficult to diagnose?
Very hard. It isn’t something a doctor may get to see in their practice. Everyone who has ALS will progress differently. It is not easy to spot. I think it took over a year before I was diagnosed because I was young and female. I didn’t fit the usual mold of an ALS patient. I also didn’t waste away as quickly as is typical. Thank God!
Question: What were some of the feelings you experienced when diagnosed?
When Dr. Brooks said, “You have ALS” I died. I felt my hopes and dreams vanish. I suddenly had no future. I felt very cold and very alone. I felt myself slip into the blackness of hopelessness. My body started retching and convulsing. I cried uncontrollably. I could not be comforted. I believe I experienced the coldest and blackest place a human mind can go to. Thank God again Jesus pulled me out of there!
Question: During the last five years of living with the disease, how has your faith been a part of the different stages of this progressive illness?
It has awakened and grown by leaps and bounds. I started reading the Bible while I was in physical therapy. My therapist is a Christian and I found myself wanting to know the source of her strength and peace. I had neither! In all the uncertainty of our situation Scott and I began searching for an anchor. We started attending various churches looking for one that felt right. We picked Covenant Presbyterian because of the clarity in which they presented God’s word. Neither Scott or I had attended any church growing up, we were at a loss of understanding of what it all meant. The congregation welcomed us with open arms. I developed a sense of belonging to a huge family. Scott and I were baptized on November 15, 1998. I accepted Jesus Christ as my Lord and Savior before my official diagnosis but I hadn’t really gotten to know Him.
So when I came back from Wisconsin all I could do is hug my kids and cry. I didn’t have any peace. Scott got the sermon series on Biblical Hope our pastors had done the month before. I decided to listen to them after 4 days of not sleeping or eating. Images of my grandma’s lifeless body with my face kept swimming in my head. As I listened to the tapes I realized I needed Jesus because He could give me what the world couldn’t…hope. I began praying earnestly for Jesus to enter my life. Immediately I felt a peace enter me that has only gotten stronger as time passes.
I asked God to let me see Him and He opened my eyes to see Him in everything. Every need my family or I have is met. A month after my diagnosis a group of women from our church organized themselves to bring us dinner 4 nights a week. To this day these same wonderful women faithfully continue to bring us dinner. They have become part of our family. Our house gets cleaned. Our shopping is done. We receive constant encouragement. Our lives are amazingly good and that can only be by the grace of God. He shows me consistently that He is trustworthy.
My faith continues to grow in spite of the fact that my body continues to worsen. For every loss I experience God gives me a greater gain. I don’t always see it right away but it is there. I can honestly say I’m thankful for God allowing this trial in my life. ALS is nothing compared to knowing Jesus.
Question: What inspired you to create your Web site?
The unquenchable desire to tell everyone about Jesus! What I’ve discovered is incredible! I want everyone to experience what I have. Since I can’t walk or talk the internet seemed like the best way to tell people about Jesus. I prayed that it would touch at least one person. So far two men have come to know Jesus through my website. I am absolutely thrilled!
Question: Frequently, when I interview people who are ill or living with a chronic condition, they like to talk about the “good” or “the positives” from the disease. Is there anything like this that you would like to share?
My life is good. If you wrote down all the good and all the bad the good side wins. I’ve been forced to slow down. I look at people and the world differently. I care more about everything and everyone. I can see what is truly important and it is each other. My kids are seeing firsthand what compassion looks like. They have become more compassionate. They are helpful without being asked to be. They are seeing where you draw endless strength. My husband and I are closer. I appreciate everything now. I have no more anger in me. No more worries. I am free to express my feelings. I’m no longer in control of my life.
Question: How has your role as wife and mother changed over the last few years?
Well the obvious change is now Scott and the kids take care of me instead of me taking care of them. Scott still treats me as his wife and not an invalid. He is wonderful to make me feel like the most beautiful woman in the world. My kids still recognize my authority as their mom. I still tell them I love them and they understand that will never change. My kids realize I’m not like their friends moms but they have accepted what I can do and don’t make a big deal over it. Instead of going out to buy what we need I use the internet to do it. What I can’t get over the internet my friends pick up for me. I do go out in my electric wheelchair and shop with my family. It is different now but I still feel useful and that’s all that matters.
Question: Is it hard to think about your future and your children’s future?
Not now. I no longer fear death because Jesus took the fear away. We haven’t told our kids I’m going to die simply because I have no idea when that will be. When I was diagnosed I calculated I would be dead by the time I was 35. Well I’m 35 now and don’t feel like I’m going to expire any time soon. The kids know what I have has no cure. We simply don’t dwell on the future we live in the present. I don’t worry about Ben & Jill because I know God will be there with them. I trust Him with my life I can trust Him with theirs. I know whatever tomorrow brings He will give me what I need to see it through. My therapist gave me a little plaque that has this on it:
I was regretting the past and fearing the future,
Suddenly my Lord was speaking: “My name is I am”
He paused. I waited. He continued,
“When you live in the past with its mistakes and regrets,
it is hard. I am not there. My name is not I WAS.
When you live in the future, with its problems and fears,
It is hard. I am not there. My name is not I WILL BE.
When you live in this moment,
It is not hard. I am here. My name is I AM.” By Helen Mallicoat
That is how I live in this moment because my Lord is here with me.
Question: What would you like to tell people about what it’s like to live with this disease?
ALS is in my opinion one of the worst diseases out there. It literally takes your life and reduces it to a prison sentence. You become trapped in a body that wastes away just fast enough to make you realize just how much of a gift every new morning you see is. I have many thoughts that are unexpressed and many desires that go unfulfilled. My mind goes untouched by the ravages of the disease. I still have the same urge to run to my kids when they are hurt, but have to sit and watch others kiss their boo boos. I have a few days here and there that the enormity of what I have threatens to suffocate me. I can’t think of anyone in the world I would wish a minute of this disease on. It is a cruel, awful disease. I could not cope without my faith.
Question: What else would you like people to know about your life or faith?
Before I developed ALS I kept pretty much to myself. Now I have opened my life to anyone who wants to be in it and I could not be happier. I would tell anyone facing any devastating event in their life to not be afraid to live. ALS has claimed my body not my life. Let people in to share your life. I am grateful for every day I have. I never like to waste them feeling sorry for myself. I try to make the most of what I have and encourage others whenever I can. What I’ve found in Jesus is real. There is nothing like it anywhere. Jesus can get you through everything!